A blog about Central Pain Syndrome, commonly referrred to as CPS. Written by a patient who has acquired it as the result of a thalamic stroke, it is intended to be a site for discussion of its symptoms, its causes, its horros, its treatments (or lack thereof), and a personal journal of my own attempts to understand and ameliorate a life lived in the constant burning of the fires of Hell.

How to get to sleep….

How do you get to sleep when you are burning in a pool of fire? You don’t. That was one of the tortures of Hell that I was taught about as a young girl in a Roman Catholic school: Hell is endless pain, so bad that you can’t even seek solace in sleep. At that age – 5 or 6 – I couldn’t really visualize what they were talking about. Pain like a skinned knee? Pain like my sore, raw throat scar after running in the cold winter weather on the playground, or after my tonsils had been removed? The nuns said that we should imagine getting a burn from a stove, or from a hot pan or dish – only it was all over your body, and it never, ever ended, and you couldn’t ever escape it. Plus, you never went to sleep. Yes, my nuns talked about Hell in italics, perhaps so that little children who had never really suffered pain might try to comprehend it. After all, *not* going to Hell was the big reason to be “good.”

So now I live halfway in Hell, and consider myself lucky. Yesterday I met a 47 year old single father, who injured his cervical spine in a car accident almost 20 years ago. He has had CPS that has gradually advanced so that his entire body is racked with pain. The electrical shocks are so bad that he loses muscular control and falls down without any warning. (Talk about a dangerous situation!) He can’t get health insurance, so he can’t afford to be treated. He can’t get disability, because both the insurance companies and the Social Security Administration deny that he is “disabled.” Of course, with Spinal CPS, there are almost no drugs that are effective for his pain. Worst of all, his doctors have no idea of why he is in that much pain, and are at loss to treat him. All he can be offered is Oxycodone and distraction.

Compared to his situation, mine is a romp in the daisy-strewn summer fields. But we both agree on one thing: it is almost impossible at times to get to sleep. You lie there, exhausted, drifting in and out of early REM sleep, only to be awoken by either a gradually increasing awareness of extreme pain, or perhaps by a sudden stabbing, or crushing, or electrical shock. The sudden ones are the ones that awaken you completely… leaving you to try to get back to the state of exhaustion, which might lead to sleep.

All of us with CPS are racked by sleep problems, We can’t get to sleep, and lie there most of the night in agony. We know that we need sleep, because only sleep will create the neurotransmitters that give us *any* relief at all. It is only after five or six hours of sleep that we can think clearly. For instance, I can only write this little essay now because I got nine hours of sleep last night -hooray! Most days, however, I can’t get to sleep until 2 AM or later, and then am troubled by nightmares, as the pain seeps into my sleeping consciousness. I take all my most soporific drugs in my last batch before bed. Sometimes these have worked so well that I have collapsed with water leg muscles before making it to the safety of the bed. The prescription drugs we take give us very vivid dreams to begin with, so the dreams of horror and torture are very realistic to our REM state. Our blood pressures must sore during these dreams, but what can we do to prevent it? Only take our drugs (if we have some that work) religiously. The gabapentin and baclofen and amitriptyline and Fentanyl and morphine patches have become our new Communion wafers. We are told that stress is the single largest trigger, but how do we avoid that?

So, in spite of all our religious practices – pills, meditation, gentle exercise, carbohydrate avoidance, gentle yet exhausting exercise and the rest – we will still find ourselves staring at the darkened ceiling, but seeing flames. How do we get to sleep? That is one of the big questions we ask each other, and we pass around our successful practices like talismanic rituals. “This is what worked for me,” we say, “so you might want to try it.” Even as we recommend our sleep systems, we know – just as the CPS patients we talk to know – that what works for us may not work for them. CPS is an umbrella diagnosis like cancer, and each case is different, and will respond differently to treatment.

Listening to audio books, what were called “books on tape” just a year or so ago, has been one of my main antidotes to sleeplessness ever since I was in the hospital following my stroke in October 2007. Back then, my brain was too battered to think very deeply. It gave me a headache to attempt to read, and logic puzzles frustrated me. Current events, one of my great passions, made me so distressed that I had to turn off the news of the hospital television. I was frightened by having apparently lost great portions of my intellectual capability, my “Self,” and needed comforting. One of the only things that I *could* stand was watching “Meerkat Manor“, which was in heavy rotation on Animal Planet. The story of the Whiskers family was both familiar to be comforting, and distant enough to be non-distressing. When I wanted to get to sleep, however, I listened to narrations of Agatha Christie books on my iPod.

I had read a few Agatha Christie books in decades past, back when some of her Poirot novels had been made into films. I knew the surprise twists in “The Murder of Roger Ackroyd, “Murder on the Orient Express,” and “Death on the Nile“. I had watched the PBS Mystery! dramatizations of the Poirot novels, which starred David Suchet, and the Miss Marple novels, starring Joan Hickson, back in the 1980s. So these stories were comfortingly familiar to me, even if the details had been forgotten. They were diverting enough to distract me from the pain. They could command my attention if I could not sleep. They could lull me to somnolence when that blessed spirit laid its hand on my brow. They followed predictable patterns: Poirot always gathered all the suspects into a single room, in order to reveal the killer, at the end of each book. There was always a successful conclusion to the mystery, which was a condolence to one faced with an intractable problem. The language Christie employed was advanced and British, and yet not academic, so listening to them soothed my battered verbal facilities back into shape.

There was also a distinct pleasure to listening to Agatha Christie books, in that the woman wrote so many of them – 82. I certainly hadn’t read all of them, so there were new mysteries, with their solutions unrevealed, for me to listen to. Because Christie is the undisputed favorite English novelist of all time, all of her books had been made into audio books, even the slighter series like “Tommy and Tuppence,” and “Inspector Battle,” or her one-offs, such as “Ten Little Indians.” It was fun for me to search for the collect the audio books. (MP3s don’t take up a lot of room, either, which is essential for a clutter-addict like me.)

Listening to as many of her 82 novels as I could find, in addition to narrations of her short stories, and BBC Radio dramatizations of perhaps four dozen, took me the better part of 18 to 24 months. After that, my bedtime listening became that of P.G. Wodehouse works, another vastly prolific and somewhat formulaic British author of the first half of the 20th Century, with over 70 novels and 200 short stories to his name. Wodehouse was the author of comedies – romantic comedies, manor-house comedies, and comedies of errors, but was like Christie in that they were somewhat formulaic, and often found in series, such as the Jeeves novels, or the Castle Blandings books. Wodehouse, like Christie was someone used the English language like the paintbox and brush of a true artist. Almost all of his works had been read into audiobooks, because Wodehouse, like Christie, has almost obsessive aficionados, many of which had discovered him in the 80s in British television dramatizations. The parallels with Christie are numerous, and his novels were a natural followup to hers. Listening to his audiobooks gave me great pleasure for another one to two years, and I was sorry to see the list end.

I’ve listened to other audio book series, most transfixingly the Aubrey/Maturin series of novels by Patrick O’Brien. These have been some of my great novelistic loves since reading “Master and Commander” in 1980. I was fortunate enough to be able to read many of his books as they were published, and looked forward to each new volume. I was very sad that O’Brien died before he was able to finish his final, 20th volume, which would have finally brought Captain Aubrey home to his Sophie for good. Listening to those 20 books on audio took another year or so.

This has been my bedtime listening since my stroke – mainly fiction. They are like the fairy tales and children’s classics that my grandmother would read to me to help me get to sleep as a tiny child, ill from her tracheotomy or her frequent throat infections, or even her tonsillectomy. I suppose that if they had given me a bottle of warm milk to get me to sleep, I would have been craving something similar as I lay in the dark nights these past five years. Instead, I was fortunate enough to have been rocked to sleep with stories.

So I have loved listening to the audiobook of “A Distant Mirror: The Calamitous 14th Century,” , for which Barbara Tuchman won the National Book Award for History in 1980. I had never read it before. It was a wonderful experience to hear how Tuchman wove so many disparate threads- the personal, the political, live daily lives and vast historical sweeps, and the analogy to our own times. For the past three months, I have looked forward to hearing a chapter or two as I fell asleep, transporting me back to a time so distant as to be almost completely unlike our own in its surface appearance, and yet still peopled by the same sorts of individuals, motivated by the same goals, and creating the same conflicts.

That anticipated and pleasant nightly sojourn was ended two nights ago when I could not get to sleep, no matter what I did. I was so tired that I fell asleep sitting up, and yet could not stay asleep as a paroxysm of pain would seize me. I drank a shot of gin as an anesthetic and laid down in bed at 1:30, figuring that it was safer than falling out of my chair. I turned on my iPod, and dialed up the Tuchman, knowing I had at least one-fifth of that 600+ page book to divert me. Surely, I thought, that would be long enough to carry me to Slumberland.

No, it was not. The pain won that night, beating darkness, warm comforters, gin, extra gabapentin, and one of the best narrative historians who has ever written, When I heard the final chapter end at 5 AM, I was still writhing. The dependable panacea had failed me. As I watched the dawn light rising – so much earlier in February than it had been in December – I tried to gather what comfort I could from the wondrously dependable presence of my husband next to me, in the bedframe that we had shared since switching to a futon in 1992. I used one-point meditation in an attempt to change the mental subject, and finally fell asleep right after the clock radio burst on with “Morning Edition” at 6 AM.

I know how much more productive I could be if I could only get eight hours of sleep a night, and arise at 7:30 or 8 instead on 10:30 or noon. One-point meditation usually isn’t the answer unless everything else has failed. It has been five years that I have been racked by broken sleep, broken dreams, terrible hours, and the dark nights of pain.

Yet, as bad as my nights may be, they are as a stubbed toe in comparison to some of the other CPS patients I know – the Spinal CPS sufferers. Yesterday, my friend with Spinal CPS told me that he didn’t understand how our government could be so cruel, denying any form of help to those of us suffering from this. I replied that it was in corporate interests to make sure that we are never recognized or supported financially. We paid into our disability pools, insurance plans, and Social Security funds all our working lives. If the people that received our money can find a way to keep us from receiving benefits, they can “keep costs down and profits high,” and thus earn themselves millions of dollars in salaries and benefits each year.

In the meantime, all we can do is hope to survive until we reach 65. Sometimes I believe that the actuaries and Boards of Directors that run our for-profit system have made a calculation that it is cheaper to let us die than to pay us. Would the American people as a whole decide that same thing, if they knew about CPS/? Would they chose to let the millions of us who are suffering from this worst of torments, living up to the fires of Hell analogy, continue on untreated for decades, until death takes us, whether due to “natural” causes or to self-slaughter?

That is a question that cannot be answered until it is actually tested, by placing this issue in front of them. In the meantime, if you have any tricks to help me get to sleep on time, please let me know.

I have terrible problems with sleep too – both quantity and quality. I’m sorry that yours is soooo bad – mine isn’t quite so bad.

Some things that work for me include

– using an electric blanket all year – so that it helps to mask some of the burning pain. Without it I would be in soooo much more pain. I even use it in summer …. just on a lower heat setting. My blanket has 10 levels in it.

– I haven’t ever used a talking book but I can understand how it’s good. I can’t use them because of my bad – almost non-existant – memory.

What I DO love is having my radio tuned to an easy-listening talkback radio station and I listen to it overnight. They never talk politics but generally “light” things like interviewing entertainment reporters, talkback topics like favourite TV shows that are about bars/pubs, famouos people, our education system etc.

– Valium doesn’t help me sleep more but it does help relax me if the pain is bad that day …. so I’m not laying in bed so “tense” because of the pain. Hope you understand what I mean.

Hope you’ll find something one day that can help you even a little bit.

We *both* love the sound of being read to, essentially, to help us get to sleep. Were you read to as an infant and toddler, too? I suspect this response to being read to at bedtime is an atavism from being three years old!

You say, “I haven’t ever used a talking book but I can understand how it’s good. I can’t use them because of my bad – almost non-existant – memory.” the great thing about listening to books by Christie or Wodehouse is that you can count on them being diverting…and also upon them being formulaic. You know that Poirot will have an array of suspects that are essentially stock characters. He will question each one, examine the scene of the crime, gather them all in a study or living room in the book’s penultimate scene, and announce the murderer. Withe Wodehouse, a dashing young mn, who has no time for romance, fall in love at first meeting with a vibrant young woman who rejects him. He wins her, but only after mistaken identities and false obstacles are raised. So there is really nothing to remember! They are fairy tales for grown-ups.

Hi all. I have searched for a place to discuss CPS with others who suffer, and wonder if I have found that place?

The story on this page about sleep made me stop and read deeply. Truly, I understand the problem. Had if for over two years and am ready to make it end by ending me.

Until today, I did not know of the terminology CPS, as I am told it is neuropathic pain. I will settle for CPS, as I can spell that much easier.

Today is my 58th birthday and I am so depressed I just want to cry out for help. I am divorced and very much without family or friends and am living in “the perfect storm” of hell. Three years ago, massive ischemic stroke. Amazingly did not die, or become totally disabled. Fact is, I lived a year, without medical assistance, no insurance, and had no idea how lucky I was at the time, to have only come away with a lot of trouble in the left leg, and essential loss of my left hand. I had a memorable day in the park, throwing a football around with my children a month after the stroke.

A year after the TBI, all hell began to rain down. The brain damage started to become very apparent, and I began to physically come apart. About that time I finally pushed through to a disability claim so I could see a doctor. She is a god incarnate with regards to her manner and willingness to believe me and help me. She is a neurologist, and after I explained my pain symptoms, and we worked on issues, she determined I have no neuropathy, but that the pain is all from the body attempting to repair all the blown up nerve connections, which has wiped out my entire left side, toe, to ear and all points in between.

The pain is like nothing I could ever imagine. I read others description and just nod my head, I have that, I have that, never had that, I am in big trouble since I am totally alone in all of this.

The brain damage is extensive and since it took out most of the right frontal lobe, my emotional controls are gone, and in addition to congetive, anlytical, short term memory, and host of other functions, depression is rampant between the depression from the brain damage and end of my normal life, when I add in the CPS, I spend a lot of time on the suicide hotline and am simply screaming for help and relief. None has appeared so my time on earth is very limited, since the only way to end the pain, is to end the life

Those of you who suffer this pain, my heart goes out to you. I would give you a warm, affectionate, caring hug if I did not know the pain would be unbearable. I cannot stand because of the pain in my feet. I cannot sit, because half of my rear end is on the left side 🙂 and is just hurts to much. I cannot lay down, because eventually I need to roll over and that means the left side is touched and so I can’t stand, sit, or lay down. I still live, but I don’t knowy why.

I was told two years ago, that I would try dozens of meds, but that in the end, the pain will never go away. She was correct, I have tried more than a dozen to no avail. Most of the “miracle” meds, lyrica, gabapentin, you name it, all bring me crippling side effects, from nausea, to uncontrollable thoughts of suicide and major attacks of vertigo that make life unlivable.

I do not know where to turn, as without the brain functions, its hard to deal with the pain, and the pain affects the brain via depression. I only receive SSI payments, and of course cannot work. I lost my home an all possessions, along with every penny, and lived for time on money from when I had to give away my home, but that is long gone and now I have not enough money to pay for a home, or any other necessities.

It is such a brutal existence. I see at least one doctor a day, every day for months. Mental doctors. pain doctors, physical therapists, you name one, I see them Pschologist, Psychiatrists, social workers, the whole gamut, but they can’t help until the pain goes away and its not going away as long as I am alive.

I guess no one gets what they truly hope for in life, but I never thought I would be the end at only 58 years of age. Worse than most all of it, I will never be able to afford to live, as SSI does not provide and I am locked into that pittance of a payment, every month, forever. IF I live four more years, I can “retire” at 62, but that is a miniscule increase of only a few hundred$ and will mean medicare instead of medicaid. I hate being on welfare, but medicaid pays for nearly everything. medicare will mean I need a supplement an that will take way any increase I might see from SSI to retirement.

IF you are in pain that makes you wish to die, I want to talk with you, because I am, and its incomprehensible to most people.

curse the luck, look at the economy that had me out of work when I had the stroke, which meant I cannot have SSDI. the difference in help financing would have let me keep my home, but dramatically, it means I am going to die. Its not the forum to complain about they system, but I am one who can understand chronic pain 24/7/365 My heart goes out to anyone there. The docs ask for a number from 1 to 10. I ten is being completly on fire, while being pummeled with a baseball bat ever minute, I am at 16, and most physicians think I am lying about that.

thanks for the space. You are in luck, I am worn out from typing with one hand, the right one doesn’t work, so I gotta move around, and sorry that I am too weary to proofread all of this.

Your heartfelt expression of your pain-filled experience rips *my* heart to read it. There really is no comfort I can give you that can help :”It could be worse”? “At least you can read and write”? I know your agony all too well, and it is literally only a micron’s worth of synapse that spares me from your grade of CPS. All I can say is that we must, and can find out how to make our lives still have meaning, and still have pleasure. We cannot look back at what we have lost. All we can do is start from this given point, and work to make our own lives, and the lives of other CPS sufferers, better.

I would like your permission to repost your letter in various sites, so that people can understand some of the agony that CPS sufferers feel. I want to put it on the home page of the Central Pain Syndrome Foundation, a non-profit which I have helped to found, and which is just getting started. You should also visit the Central Pain Syndrome page on Facebook. You certainly must join the CPS Alliance, which is a Yahoo users group that has a mailing list of almost 600 people exchanging emails.

Thank you for the kind and gentle words. Such things seem hard to come by anymore. If anything I said can help anyone, please feel free to post my words. I would ask that you correct the spelling errors though 🙂

It is very true that we cannot waste time over things we have lost and what happened in the past. FWIW, in my case, the brain damage took away my ability to imagine. Image being the key portion of what was taken, in that I cannot summon up images in my mind. The only thing that appears in my head is darkness, so I find it desperately impossible to “imagine” a future, since I simply cannot see it. All of that is brain injury issues, no pain, but what is keeping me from finding any strength to overcome this impossible situation is that pain. Many of us see ourselves as tough enough to overcome pain. We get hurt, we get cut, we break a bone, and it hurts like almighty “you know what” but we overcome by using out minds to find better things to do, methods to alleviate the focus on the pain, and even more important, we know that the pain will eventually subside. I was present for the birth of my five children an respectfully salute every woman who suffers through child birth and even the 9 months of carrying the child, from illness, to physical impairment. I am stunned at how strong willed such ladies are.

As I have always tried to comprehend how my wife, and her peers, could even survive, I have come to realize that nothing can alleviate their pain, but that the mind allows it and controls it because it knows, that the pain will eventually go away. Always, my hat is off to women who go through it, but my comparison might be to a lady who has given birth, and to ask her to consider her plight if at the peak of the most overwhelming contraction pain, she was told that the pain would never end, and that she would feel just like that, forever. I think that speaks to the power of the mind to cope with indescribable pain. Plus, she gets a sweet little child to love and care for after her trauma. All I get is a life with nothing or no one in it, and no way to secure and maintain that life, due to the disability and loss of temporal possessions.

The issue I deal with is that I need my mind to control this, but my mind is damaged and it has been explained to me, and it is quite obvious that my pain is forever, until I die, so given those facts the ultimate solution seems rather obvious, barring a medical miracle, which is not in the offing. I have looked for the places you mentioned, facebook and a web site? but haven’t found them yet.

My story is so involved, has so many layers, from TIA, to Stroke, to heart attack,crippling disability and into this CPS, that it is difficult to share, and impossible to explain.

I do appreciate you kind words, and hope this finds you having an enjoyable day.

John omg you live my life! I live yours! I gave up trying to explain the pain !! 24/7/365 they have no concept. I too lost everything! Just want to die to end the pain! Every day eyes open. Brainn cliicks and instant pain!! do not even talk any more. Why talk? depression is deep dark hole now. Too tired to climb out

Rachel, you are NOT alone. Please join the CPS facebook page or the CPS Alliance at yahoogroups. There are hundreds of us who are dealing with the pain, the deep depression that it causes, and who share both their attempts to find relief and their stories. Depression is ALWAYS worse when you feel alone. But you are not alone.

I am sad to know of your plight. Trite words don’t help, but it would appear we have an understanding of the other’s feelings. I want to help you, and if you want to talk, and share, I hope you will feel free to message me. I have bee to the facebook pages, and find them to be too large and overfilled to be a place I really want to share. Certainly hope that offends no one who i wanting to help. nonetheless, you are invited to visit me anytime you wish or feel the need. Alone and in pain is a hell of a way to have to go through life, so I volunteer to help you if I can